PMR question

[remission]

Has anyone had their dr/rheumie suggested the pain is most likely residual ?

I was a 2mg, but then neck on both sides started to be painful, so went up to 4, that only helped with he one side and did improve on the right side. I have really been overdoing it lately as we are working on the house, so wasn’t sure if it was PMR or sore neck frm the work, at any rate can’t speak to my doctor until April 2o th... spoke to her nurse and explained I can handle the pain, it’s like I have slept wrong, that kind of soreness but concerned about developing GCA, to which she said, highly unlikely and that it simply sounds like residual pain!

I ve had PMR fir almost two years and never sure when to trust my body or ride it out.

Any thoughts?

Thanks

[PMRpro Ambassador]

Lord only knows what that term was supposed to mean!

If you have been working a lot it could well be the sort of pain I have at this precise moment!!!! I'm halfway through vacuuming and washing the balcony floor - I could have planted spuds in places! Anything that involves me leaning even slightly forwards and using my arms always causes muscle pain, mostly piriforms and lats but also shoulders and neck. It isn't directly PMR but is myofascial pain syndrome which can be part of PMR. It too is caused by the same inflammatory substances as PMR but instead of being systemic they are concentrated in the muscle fascia and as hardened muscle fibres which you can feel as knots in the muscles. I find mine is mostly better at higher doses of pred but returns if I reduce the pred and overdo it.

She's IS right it is unlikely to be GCA - but it can appear out of the blue at any dose. And I know a few people whose doctor has been convinced that any pain that reappears at low doses is OA or something else and persuaded them that they should stop pred and take paracetamol. The result was invariably a flare of the PMR! PMR isn't gone until you can get to zero pred with a really slow taper, especially at the end, and then get through more than a couple of months without the pain returning, Even 1mg, even 1/2mg can be enough to keep the inflammation under wraps and you symptom-free. Stop it too soon and the PMR announces it is still there ...

[GerriMc in reply to PMRpro]

I have exactly those pains in my neck and shoulders. I was doing ok on 1mg but tried to go to 1/2 and the pains got worse. I’m back on 2mg now and feeling better but so disappointed. You’re so right, even a tiny dose is significant.

[piglette]

I am with PMRPro what on earth does your doctor mean by residual pain in your case? I begin to wonder if some of these doctors just make it up!

[Ssratha]

Yes i get pain in all parts of my body. 5 years on prend, have weaned80mg to 3 1/5, i do get some pmr symptoms for 2 - 4 weeks, weaning 1/2mg on the the day a week style. Takes 7 weeks to fully in a week go down 1/2mg. Im getting there. But if i do certainphysical things, huge range, holding mobile, digging vacuuming, spinning, carrying, writing for more than 1/2 to1hr i may feel pain and stiffness. Which i think is partly prendisolone related side effect, part wear and tear and age related and probably some inflammation, for a range of reasons. I do homeopathic support for weaning which is really helpful and regular qigong class which is really really helpful. Pain is pain, doctors arent trained well these days. Generally speaking

[dancersize2]

I developed a sore back of neck, top of spine and down my left arm and found I needed panadeine first day (just 2 tabs) then panadol for another couple of days. I think I'd strained something because we'd got back to dancing and I hold my arms up. Now no pain despite still dancing (but developed a corn under my heel to go on with.)I think our muscles do suffer as a result of the pred but I know I'd be suffering more without the pred. Down to 1/2mg plus methotextrate.

[remission in reply to dancersize2]

Thanks, my neck is most sore at night and during the day just feels like I slept wrong in it.....not sure to increase or. Not

[dancersize2 in reply to remission]

I'd try a small increase for a couple of days as well as parac etamol.